Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Hi, I was wondering how many folks who have mito are also diabetic. I was just diagnosed Monday and I was put on glucophage and glipizide (pills). I had a bad reaction to the glucophage (severe muscle cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm on insulin. The covering endo wanted me inpatient but I managed to talk him out of it. (Who would take care of ?) Now I'm feeling better but all my underlying symptoms are much worse (weakness, vision problems, concentration and memory, cold white fingers, splitting headache) Dr. Korson hasn't gotten back to me about how much carnitine to take and it's driving me nuts. Blood sugar is back down to the 200's (it had been 400's with large ketones) so I think things are better overall, but I find myself wishing I could have a saline bolus. We give them to and I wonder if I'd feel better. I just know I'm probably dry from the high sugars. Crazy. It's been quite a week. The endo thinks that the diabetes I have may be type 1 (but he wanted to test my response to sulfonyureas before insulin) and he wants to do genetic testing to isolate the gene defect. He also thinks it's a dominant trait. Ugh. There goes the gene pool. It's also been a rough week for news about the other kids: Nick probably has a mild presentation of whatever has, and Dr. K wants to see in the clinic. Now I can't even console myself with chocolate. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Heidi Diabetes is very common in folks with mito. I have been diagnosed with it, but am able to keep it in check with diet and alpha lopoic acid. I need to start checking it in the middle of the night when I wake up, as I think it is dipping during the night. The diabetes that many with mito is a strange type. My blood sugars go up with exercise and down with rest which is the opposite of normal. Others on the list also have this reaction. You might want to notate what level of activity has preceeded the reading. I'm sorry to hear that Nick may have the same thing as . I will keep your family in my thoughts. laurie > > Reply-To: > Date: Sun, 20 Feb 2005 14:29:03 -0000 > To: > Subject: Diabetes > > > > Hi, I was wondering how many folks who have mito are also diabetic. > I was just diagnosed Monday and I was put on glucophage and glipizide > (pills). I had a bad reaction to the glucophage (severe muscle > cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm > on insulin. The covering endo wanted me inpatient but I managed to > talk him out of it. (Who would take care of ?) Now I'm > feeling better but all my underlying symptoms are much worse > (weakness, vision problems, concentration and memory, cold white > fingers, splitting headache) > > Dr. Korson hasn't gotten back to me about how much carnitine to take > and it's driving me nuts. Blood sugar is back down to the 200's (it > had been 400's with large ketones) so I think things are better > overall, but I find myself wishing I could have a saline bolus. We > give them to and I wonder if I'd feel better. I just know I'm > probably dry from the high sugars. Crazy. > > It's been quite a week. The endo thinks that the diabetes I have may > be type 1 (but he wanted to test my response to sulfonyureas before > insulin) and he wants to do genetic testing to isolate the gene > defect. He also thinks it's a dominant trait. Ugh. There goes the > gene pool. It's also been a rough week for news about the other > kids: Nick probably has a mild presentation of whatever has, > and Dr. K wants to see in the clinic. Now I can't even console > myself with chocolate. > > Heidi > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 I forgot to mention that before the insulin pump my blood sugars were often in the 400 and sometimes 500 range after exercising. The pump is actually about the size of a pager and can be worn with a belt clip or you can get a strap to strap it to your body. Diabetes Hi, I was wondering how many folks who have mito are also diabetic. I was just diagnosed Monday and I was put on glucophage and glipizide (pills). I had a bad reaction to the glucophage (severe muscle cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm on insulin. The covering endo wanted me inpatient but I managed to talk him out of it. (Who would take care of ?) Now I'm feeling better but all my underlying symptoms are much worse (weakness, vision problems, concentration and memory, cold white fingers, splitting headache) Dr. Korson hasn't gotten back to me about how much carnitine to take and it's driving me nuts. Blood sugar is back down to the 200's (it had been 400's with large ketones) so I think things are better overall, but I find myself wishing I could have a saline bolus. We give them to and I wonder if I'd feel better. I just know I'm probably dry from the high sugars. Crazy. It's been quite a week. The endo thinks that the diabetes I have may be type 1 (but he wanted to test my response to sulfonyureas before insulin) and he wants to do genetic testing to isolate the gene defect. He also thinks it's a dominant trait. Ugh. There goes the gene pool. It's also been a rough week for news about the other kids: Nick probably has a mild presentation of whatever has, and Dr. K wants to see in the clinic. Now I can't even console myself with chocolate. Heidi Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 I forgot to mention that before the insulin pump my blood sugars were often in the 400 and sometimes 500 range after exercising. The pump is actually about the size of a pager and can be worn with a belt clip or you can get a strap to strap it to your body. Diabetes Hi, I was wondering how many folks who have mito are also diabetic. I was just diagnosed Monday and I was put on glucophage and glipizide (pills). I had a bad reaction to the glucophage (severe muscle cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm on insulin. The covering endo wanted me inpatient but I managed to talk him out of it. (Who would take care of ?) Now I'm feeling better but all my underlying symptoms are much worse (weakness, vision problems, concentration and memory, cold white fingers, splitting headache) Dr. Korson hasn't gotten back to me about how much carnitine to take and it's driving me nuts. Blood sugar is back down to the 200's (it had been 400's with large ketones) so I think things are better overall, but I find myself wishing I could have a saline bolus. We give them to and I wonder if I'd feel better. I just know I'm probably dry from the high sugars. Crazy. It's been quite a week. The endo thinks that the diabetes I have may be type 1 (but he wanted to test my response to sulfonyureas before insulin) and he wants to do genetic testing to isolate the gene defect. He also thinks it's a dominant trait. Ugh. There goes the gene pool. It's also been a rough week for news about the other kids: Nick probably has a mild presentation of whatever has, and Dr. K wants to see in the clinic. Now I can't even console myself with chocolate. Heidi Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 -Thanks Janet I am taking lantus at bedtime. Adding the lantus brought my sugars from 400's to upper 200's. I'm increasing from 20 units to 25 units tonight. I'll have to keep an eye on what happens with exercise. My 2 year old has rebound highs- will drop to the 40's and then zoom up to 300's. This was when she was on j tube feeds, now she's on TPN 24 hours a day and only gets 4.8% dextrose and her sugars are perfect. Most kids get 10% and many mito kids get even more than that. Right now I'm not supposed to exercise because of the dizziness and the high ketones. I was on humalog and NPH when I was pregnant and I had really good control then. Never saw a blood sugar over 250 before insulin and over 150 while I was on it, actually. I don't know what the deal is now. That's interesting about the glucophage... no one mentioned that. My husband's on glucophage and he didn't have any side effects. His blood sugars were high but never over 200. Mine just zoomed up to the 400's when no one was looking and stayed there. The insulin pump seems like a better way to control things. It seems like the doctor hesitates adding more injections or tests, as if it would make life complicated. He has NO idea what my life is like! lol It's way more complicated having brain fog or needing a nap. Blood tests and meds fit in no problem. Do you see a metabolic geneticist or a regular endo? I plan on switching to a regular endo in my area once the genetic stuff is figured out. My doctor is in Boston because I was referred by Dr. Korson and it's a real pain in the butt (we're 2 hours away). Thanks Heidi -- In , " Janet Sample " wrote: > I forgot to mention that before the insulin pump my blood sugars were often in the 400 and sometimes 500 range after exercising. > > The pump is actually about the size of a pager and can be worn with a belt clip or you can get a strap to strap it to your body. > Diabetes > > > > Hi, I was wondering how many folks who have mito are also diabetic. > I was just diagnosed Monday and I was put on glucophage and glipizide > (pills). I had a bad reaction to the glucophage (severe muscle > cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm > on insulin. The covering endo wanted me inpatient but I managed to > talk him out of it. (Who would take care of ?) Now I'm > feeling better but all my underlying symptoms are much worse > (weakness, vision problems, concentration and memory, cold white > fingers, splitting headache) > > Dr. Korson hasn't gotten back to me about how much carnitine to take > and it's driving me nuts. Blood sugar is back down to the 200's (it > had been 400's with large ketones) so I think things are better > overall, but I find myself wishing I could have a saline bolus. We > give them to and I wonder if I'd feel better. I just know I'm > probably dry from the high sugars. Crazy. > > It's been quite a week. The endo thinks that the diabetes I have may > be type 1 (but he wanted to test my response to sulfonyureas before > insulin) and he wants to do genetic testing to isolate the gene > defect. He also thinks it's a dominant trait. Ugh. There goes the > gene pool. It's also been a rough week for news about the other > kids: Nick probably has a mild presentation of whatever has, > and Dr. K wants to see in the clinic. Now I can't even console > myself with chocolate. > > Heidi > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 -Thanks Janet I am taking lantus at bedtime. Adding the lantus brought my sugars from 400's to upper 200's. I'm increasing from 20 units to 25 units tonight. I'll have to keep an eye on what happens with exercise. My 2 year old has rebound highs- will drop to the 40's and then zoom up to 300's. This was when she was on j tube feeds, now she's on TPN 24 hours a day and only gets 4.8% dextrose and her sugars are perfect. Most kids get 10% and many mito kids get even more than that. Right now I'm not supposed to exercise because of the dizziness and the high ketones. I was on humalog and NPH when I was pregnant and I had really good control then. Never saw a blood sugar over 250 before insulin and over 150 while I was on it, actually. I don't know what the deal is now. That's interesting about the glucophage... no one mentioned that. My husband's on glucophage and he didn't have any side effects. His blood sugars were high but never over 200. Mine just zoomed up to the 400's when no one was looking and stayed there. The insulin pump seems like a better way to control things. It seems like the doctor hesitates adding more injections or tests, as if it would make life complicated. He has NO idea what my life is like! lol It's way more complicated having brain fog or needing a nap. Blood tests and meds fit in no problem. Do you see a metabolic geneticist or a regular endo? I plan on switching to a regular endo in my area once the genetic stuff is figured out. My doctor is in Boston because I was referred by Dr. Korson and it's a real pain in the butt (we're 2 hours away). Thanks Heidi -- In , " Janet Sample " wrote: > I forgot to mention that before the insulin pump my blood sugars were often in the 400 and sometimes 500 range after exercising. > > The pump is actually about the size of a pager and can be worn with a belt clip or you can get a strap to strap it to your body. > Diabetes > > > > Hi, I was wondering how many folks who have mito are also diabetic. > I was just diagnosed Monday and I was put on glucophage and glipizide > (pills). I had a bad reaction to the glucophage (severe muscle > cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm > on insulin. The covering endo wanted me inpatient but I managed to > talk him out of it. (Who would take care of ?) Now I'm > feeling better but all my underlying symptoms are much worse > (weakness, vision problems, concentration and memory, cold white > fingers, splitting headache) > > Dr. Korson hasn't gotten back to me about how much carnitine to take > and it's driving me nuts. Blood sugar is back down to the 200's (it > had been 400's with large ketones) so I think things are better > overall, but I find myself wishing I could have a saline bolus. We > give them to and I wonder if I'd feel better. I just know I'm > probably dry from the high sugars. Crazy. > > It's been quite a week. The endo thinks that the diabetes I have may > be type 1 (but he wanted to test my response to sulfonyureas before > insulin) and he wants to do genetic testing to isolate the gene > defect. He also thinks it's a dominant trait. Ugh. There goes the > gene pool. It's also been a rough week for news about the other > kids: Nick probably has a mild presentation of whatever has, > and Dr. K wants to see in the clinic. Now I can't even console > myself with chocolate. > > Heidi > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2005 Report Share Posted February 20, 2005 Heid, One other important thing I have learned. I do not follow the carbs listed on all foods to the t. For example, in October I had a pop tart for breakfast one morning (actually in the car driving to work). The box said it contained 37 carbs. I thought that was low since a baked potato has like 60. Anyway, the np said that was probably correct but that it contains alot of sugar and fat and that my body took longer to metabolize it. My blood sugar after 4 hours was still 230. Now whenever I eat a poptart for breakfast I either put in 50 for the carbs rather than 37 or I use the square bolus feature on the meter and take half of the recommended insulin right away and spread the rest over 2 hours (the pump automatically does this,you just need to tell it the time frame). Also, the pump has a carb wizard that you progam to say 1 unit for every 7 carbs. You just punch in your current blood sugar, the amount of carbs you will be eating, and it tells you how much bolus you should take based on your target blood sugar level. I am very good at math but sometimes I just can't think straight even to add 2 plus 2, so not having to figure out how much insulin to give is a real benefit. And, when I ran out of insulin in the pump the other day and had to take a shot I used the wizard to calculate the amount. Running out is not a real problem as the reservoir is supposed to hold 300 units (I usually can get it filled to 280 units or so--not very good at it) It is like filling a syringe. Anyway, I like to use it till it is all gone or only a few units left. Sometimes I forget to take the extra reservoir or insulin bottle from home and have to wait till I get home from work at 7 pm to refill it. Janet Janet Sample Diabetes > > > > Hi, I was wondering how many folks who have mito are also diabetic. > I was just diagnosed Monday and I was put on glucophage and glipizide > (pills). I had a bad reaction to the glucophage (severe muscle > cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm > on insulin. The covering endo wanted me inpatient but I managed to > talk him out of it. (Who would take care of ?) Now I'm > feeling better but all my underlying symptoms are much worse > (weakness, vision problems, concentration and memory, cold white > fingers, splitting headache) > > Dr. Korson hasn't gotten back to me about how much carnitine to take > and it's driving me nuts. Blood sugar is back down to the 200's (it > had been 400's with large ketones) so I think things are better > overall, but I find myself wishing I could have a saline bolus. We > give them to and I wonder if I'd feel better. I just know I'm > probably dry from the high sugars. Crazy. > > It's been quite a week. The endo thinks that the diabetes I have may > be type 1 (but he wanted to test my response to sulfonyureas before > insulin) and he wants to do genetic testing to isolate the gene > defect. He also thinks it's a dominant trait. Ugh. There goes the > gene pool. It's also been a rough week for news about the other > kids: Nick probably has a mild presentation of whatever has, > and Dr. K wants to see in the clinic. Now I can't even console > myself with chocolate. > > Heidi > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Stover has great low carb and sugar free chocolate, it almost tastes like the real thing (believe me, most don't!). Unfortunately, adjusting to a diabetes diagnosis isn't a task that takes only a few days, my thoughts are with you. Regarding being inpatient and who will take care of your kids, remember if you go into a diabetic coma, they'll have to call 911 and get you taken care of - do you want that? Not to scare you, but inpatient at onset of diabetes is sometimes a good choice. Sounds like they were trying Glucophage as a " magic bullet " , but it seems those type things don't work well for mito patients. Take care, RH > > > From: " heidicoleman2002 " > > Reply-To: > > Date: Sun, 20 Feb 2005 14:29:03 -0000 > > To: > > Subject: Diabetes > > > > > > > > Hi, I was wondering how many folks who have mito are also diabetic. > > I was just diagnosed Monday and I was put on glucophage and glipizide > > (pills). I had a bad reaction to the glucophage (severe muscle > > cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm > > on insulin. The covering endo wanted me inpatient but I managed to > > talk him out of it. (Who would take care of ?) Now I'm > > feeling better but all my underlying symptoms are much worse > > (weakness, vision problems, concentration and memory, cold white > > fingers, splitting headache) > > > > Dr. Korson hasn't gotten back to me about how much carnitine to take > > and it's driving me nuts. Blood sugar is back down to the 200's (it > > had been 400's with large ketones) so I think things are better > > overall, but I find myself wishing I could have a saline bolus. We > > give them to and I wonder if I'd feel better. I just know I'm > > probably dry from the high sugars. Crazy. > > > > It's been quite a week. The endo thinks that the diabetes I have may > > be type 1 (but he wanted to test my response to sulfonyureas before > > insulin) and he wants to do genetic testing to isolate the gene > > defect. He also thinks it's a dominant trait. Ugh. There goes the > > gene pool. It's also been a rough week for news about the other > > kids: Nick probably has a mild presentation of whatever has, > > and Dr. K wants to see in the clinic. Now I can't even console > > myself with chocolate. > > > > Heidi > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Stover has great low carb and sugar free chocolate, it almost tastes like the real thing (believe me, most don't!). Unfortunately, adjusting to a diabetes diagnosis isn't a task that takes only a few days, my thoughts are with you. Regarding being inpatient and who will take care of your kids, remember if you go into a diabetic coma, they'll have to call 911 and get you taken care of - do you want that? Not to scare you, but inpatient at onset of diabetes is sometimes a good choice. Sounds like they were trying Glucophage as a " magic bullet " , but it seems those type things don't work well for mito patients. Take care, RH > > > From: " heidicoleman2002 " > > Reply-To: > > Date: Sun, 20 Feb 2005 14:29:03 -0000 > > To: > > Subject: Diabetes > > > > > > > > Hi, I was wondering how many folks who have mito are also diabetic. > > I was just diagnosed Monday and I was put on glucophage and glipizide > > (pills). I had a bad reaction to the glucophage (severe muscle > > cramps, vomiting, dizziness and mixed up speech, low BP) and now I'm > > on insulin. The covering endo wanted me inpatient but I managed to > > talk him out of it. (Who would take care of ?) Now I'm > > feeling better but all my underlying symptoms are much worse > > (weakness, vision problems, concentration and memory, cold white > > fingers, splitting headache) > > > > Dr. Korson hasn't gotten back to me about how much carnitine to take > > and it's driving me nuts. Blood sugar is back down to the 200's (it > > had been 400's with large ketones) so I think things are better > > overall, but I find myself wishing I could have a saline bolus. We > > give them to and I wonder if I'd feel better. I just know I'm > > probably dry from the high sugars. Crazy. > > > > It's been quite a week. The endo thinks that the diabetes I have may > > be type 1 (but he wanted to test my response to sulfonyureas before > > insulin) and he wants to do genetic testing to isolate the gene > > defect. He also thinks it's a dominant trait. Ugh. There goes the > > gene pool. It's also been a rough week for news about the other > > kids: Nick probably has a mild presentation of whatever has, > > and Dr. K wants to see in the clinic. Now I can't even console > > myself with chocolate. > > > > Heidi > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 37 sounds pretty bad to me - I am on a low carb diet, and pretty much avoid everything that has any added sugar, in addition to most fruits. If I go above 40 g of carbohydrates in a day, or have more than 10 g of sucrose (in products, not straight lol), I have increased mito symptoms. But it doesn't necessarily reflect in my blood sugar. I have glucose intolerance, but haven't been diagnosed with diabetes. My friend's daughter has a pump, but is having a rough time with it, as she swims for school (senior in h.s.), so adjusting for exercise is rough. Sometimes different types of insulin work well for different people. I'm glad to hear the pump works well for you, Janet. Does diet help decrease your sugars at all? I was on a " diabetes diet " previously, not low carb per se, but complex carbs and low calories - I HATED IT! Now I'm on an Atkins-type low carb, and eat as much as I want (not sugar or many carbs, but anything else almost), and LOVE IT! Take care, RH > > I forgot to mention that before the insulin pump my blood sugars > were often in the 400 and sometimes 500 range after exercising. > > > > The pump is actually about the size of a pager and can be worn with > a belt clip or you can get a strap to strap it to your body. > > Diabetes > > > > > > > > Hi, I was wondering how many folks who have mito are also > diabetic. > > I was just diagnosed Monday and I was put on glucophage and > glipizide > > (pills). I had a bad reaction to the glucophage (severe muscle > > cramps, vomiting, dizziness and mixed up speech, low BP) and now > I'm > > on insulin. The covering endo wanted me inpatient but I managed > to > > talk him out of it. (Who would take care of ?) Now I'm > > feeling better but all my underlying symptoms are much worse > > (weakness, vision problems, concentration and memory, cold white > > fingers, splitting headache) > > > > Dr. Korson hasn't gotten back to me about how much carnitine to > take > > and it's driving me nuts. Blood sugar is back down to the 200's > (it > > had been 400's with large ketones) so I think things are better > > overall, but I find myself wishing I could have a saline bolus. > We > > give them to and I wonder if I'd feel better. I just know > I'm > > probably dry from the high sugars. Crazy. > > > > It's been quite a week. The endo thinks that the diabetes I have > may > > be type 1 (but he wanted to test my response to sulfonyureas > before > > insulin) and he wants to do genetic testing to isolate the gene > > defect. He also thinks it's a dominant trait. Ugh. There goes > the > > gene pool. It's also been a rough week for news about the other > > kids: Nick probably has a mild presentation of whatever > has, > > and Dr. K wants to see in the clinic. Now I can't even > console > > myself with chocolate. > > > > Heidi > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein are not necessarily those of the list moderators. > The author of this e mail is entirely responsible for its content. > List members are reminded of their responsibility to evaluate the > content of the postings and consult with their physicians regarding > changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who > sends one is automatically moderated or removed depending on the > severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 37 sounds pretty bad to me - I am on a low carb diet, and pretty much avoid everything that has any added sugar, in addition to most fruits. If I go above 40 g of carbohydrates in a day, or have more than 10 g of sucrose (in products, not straight lol), I have increased mito symptoms. But it doesn't necessarily reflect in my blood sugar. I have glucose intolerance, but haven't been diagnosed with diabetes. My friend's daughter has a pump, but is having a rough time with it, as she swims for school (senior in h.s.), so adjusting for exercise is rough. Sometimes different types of insulin work well for different people. I'm glad to hear the pump works well for you, Janet. Does diet help decrease your sugars at all? I was on a " diabetes diet " previously, not low carb per se, but complex carbs and low calories - I HATED IT! Now I'm on an Atkins-type low carb, and eat as much as I want (not sugar or many carbs, but anything else almost), and LOVE IT! Take care, RH > > I forgot to mention that before the insulin pump my blood sugars > were often in the 400 and sometimes 500 range after exercising. > > > > The pump is actually about the size of a pager and can be worn with > a belt clip or you can get a strap to strap it to your body. > > Diabetes > > > > > > > > Hi, I was wondering how many folks who have mito are also > diabetic. > > I was just diagnosed Monday and I was put on glucophage and > glipizide > > (pills). I had a bad reaction to the glucophage (severe muscle > > cramps, vomiting, dizziness and mixed up speech, low BP) and now > I'm > > on insulin. The covering endo wanted me inpatient but I managed > to > > talk him out of it. (Who would take care of ?) Now I'm > > feeling better but all my underlying symptoms are much worse > > (weakness, vision problems, concentration and memory, cold white > > fingers, splitting headache) > > > > Dr. Korson hasn't gotten back to me about how much carnitine to > take > > and it's driving me nuts. Blood sugar is back down to the 200's > (it > > had been 400's with large ketones) so I think things are better > > overall, but I find myself wishing I could have a saline bolus. > We > > give them to and I wonder if I'd feel better. I just know > I'm > > probably dry from the high sugars. Crazy. > > > > It's been quite a week. The endo thinks that the diabetes I have > may > > be type 1 (but he wanted to test my response to sulfonyureas > before > > insulin) and he wants to do genetic testing to isolate the gene > > defect. He also thinks it's a dominant trait. Ugh. There goes > the > > gene pool. It's also been a rough week for news about the other > > kids: Nick probably has a mild presentation of whatever > has, > > and Dr. K wants to see in the clinic. Now I can't even > console > > myself with chocolate. > > > > Heidi > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein are not necessarily those of the list moderators. > The author of this e mail is entirely responsible for its content. > List members are reminded of their responsibility to evaluate the > content of the postings and consult with their physicians regarding > changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who > sends one is automatically moderated or removed depending on the > severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 Hello, Actually, 37 carbs is not too bad for me, what is worse is the calories! I try to limit my carb intake to 50 per day. I try not to do the pop tart too often but that day I woke up late, was all upset because the car would not start and basically just grabbed the pop tart. I keep them in the car in case I have low blood sugar. Diet pretty much does not work for me to control my blood sugars except they go very high when I eat sugary foods or candy. The way I discovered that physical exercise raised my blood sugars was that where I was working quite often after lunch I had to walk out to the shipping area to check on some paperwork. It was about a 1/4 mile out there and 1/4 mile back. I found that on many days my blood sugar was pretty much the same around 11:30 when I took lunch. I would always take insulin to cover my lunch. Then I would check my sugar around 2:00. Sometimes I would be around 100 and sometimes up in the 250 range. I thought it was what I was eating. I kept track and sometimes I would be 100 when I had a quarter pounder and french fries and over 200 when I had eaten a salad. Then I started to keep track of when I walked out to the shipping area after lunch and saw a pattern. I really realized a pattern when I was working on my kitchen cabinets about 4 years ago. I was sanding them and one night got home from work, took my blood sugar and it was 125. I ate a sandwich, covered with insulin, drank nothing but water and 5 hours later at 10:30 before going to bed my blood sugar was 298. I try to limit my carbs to about 50 per day and also seldom eat sugary snacks or deserts. For me this is more to control my weight than the blood sugar as I do not do good on a low carb diet--I just feel hungary all the time no matter how much I eat. I can see where the pump would interfere with swimming although I was reading on the medtronic sight of some that are waterproof. With " normal " diabetics the blood sugar goes down with exercise so that would be a problem along with the pump giving insulin all the time, I could see where blood sugar lows could happen easily. I generally take the pump off to shower or if we are going swimming. My blood sugar rises but then I just give a small extra amount to correct it. I just do not want it to get wet. Glad the atkins type diet works for you. A couple of people who I work with at my temp job just went on the South Beach diet. They say they are hungary all the time. Janet Sample Diabetes > > > > > > > > Hi, I was wondering how many folks who have mito are also > diabetic. > > I was just diagnosed Monday and I was put on glucophage and > glipizide > > (pills). I had a bad reaction to the glucophage (severe muscle > > cramps, vomiting, dizziness and mixed up speech, low BP) and now > I'm > > on insulin. The covering endo wanted me inpatient but I managed > to > > talk him out of it. (Who would take care of ?) Now I'm > > feeling better but all my underlying symptoms are much worse > > (weakness, vision problems, concentration and memory, cold white > > fingers, splitting headache) > > > > Dr. Korson hasn't gotten back to me about how much carnitine to > take > > and it's driving me nuts. Blood sugar is back down to the 200's > (it > > had been 400's with large ketones) so I think things are better > > overall, but I find myself wishing I could have a saline bolus. > We > > give them to and I wonder if I'd feel better. I just know > I'm > > probably dry from the high sugars. Crazy. > > > > It's been quite a week. The endo thinks that the diabetes I have > may > > be type 1 (but he wanted to test my response to sulfonyureas > before > > insulin) and he wants to do genetic testing to isolate the gene > > defect. He also thinks it's a dominant trait. Ugh. There goes > the > > gene pool. It's also been a rough week for news about the other > > kids: Nick probably has a mild presentation of whatever > has, > > and Dr. K wants to see in the clinic. Now I can't even > console > > myself with chocolate. > > > > Heidi > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein are not necessarily those of the list moderators. > The author of this e mail is entirely responsible for its content. > List members are reminded of their responsibility to evaluate the > content of the postings and consult with their physicians regarding > changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who > sends one is automatically moderated or removed depending on the > severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Kim Not having diabetes does not rule out mito. There are many mito folks who don't have mito. There are also those who didn't have it and got it as they got older. Since aging is a process of normal damage to mitochondria, you can kind of think of the things that people get as they age, but sometimes with mito they might come at an earlier time. The disorder might also behave differently. laurie > > > I added two links to the " Links " section of the site. One is on > diabetes in general (I saw that there is a link to detailed diabetes > info already), and the other is on autoimmune diseases. Note that > diabetes and rheumatoid arthritis are mentioned as autoimmune > diseases. > > I remember from a while back that several of us were lamenting not > having an " autoimmunologist " to find out what if any antibodies are > impacting our mito symptoms. > > Take care, > RH > > > > > No, diabetes is common in mito patients, but is just one of many > associated > > conditions. I'm not aware of any studies of the percentage of mito > patients > > who have diabetes, but there may be some estimates in the > literature. Anyone > > know? The UMDF conference (June, St Louis) is offering one session > called, > > " Diabetes and the Mitochondrial Adult Patient " by > Procaccio, MD, > > PhD. Maybe those who attend can post a report. > > > > > > > > Barbara > > > > > > > > _____ > > > > From: klaga5 [mailto:klaga5@y...] > > Sent: Thursday, April 14, 2005 10:55 AM > > To: > > Subject: Diabetes > > > > > > > > > > That's another point. If someone doesn't have diabetes, does that > > mean they don't have mito? > > Kim > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Definitely not!! My mother had diabetes as did my aunt and grandmother. But, my sister did not and she died at 33 after having seizures. It was then me discovered the MELAS. She had been very healthy and athletic prior to that. The diabetes is just another symptom that reacts differently with the mito. Diabetes That's another point. If someone doesn't have diabetes, does that mean they don't have mito? Kim > > I was told by my doctor that my particular triglyceride problem is > > hereditary and has nothing to do with diet or even exercise. > Given the fact > > that the mito is the hereditary factor in our family and that my > maternal > > grandmother's death certificate read that she died of heart > failure, I > > expect that this is a Mito factor for us. I have heard before > that high > > triglycerides is indeed an issue for Mito patients as well but > don't have > > any resources to back this up. > > > > > > > > Here again - as medically recommended - we are fighting the > effects of the > > disease by treating the symptoms. I am taking Omega 3 as well but > this is > > something I added myself. I'm also trying to add more fish to my > diet. I > > can't add much in the way of carbs because they do a number on my > BS > > readings. I get my carbs from fruit and vegetables during the day > but these > > are complex carbs. I've actually started a diet program that is > giving me > > hope. I've been on it for a week and in that week, my BS readings > have > > leveled off to normal except for 1 day when I drank tonic water > with > > quinine. It's too bad that I didn't read the label before I drank > it > > because it was high in carbs and my sugar jumped over 200 within ½ > hour. It > > never normally goes over 200. I poured the rest of the bottle out > and went > > back to mostly water and my sugar readings are back to normal. > This morning > > when I got up, which is the worst time of the day for me normally, > my > > reading was 99. > > > > > > > > I go for blood work again next month and will know in June if we > have found > > the answer to dropping those dangerous T readings. I don't feel > too bad > > about mine though as I have a friend who has had triglyceride > readings in > > the 3000 range. I do have a feeling that she has something going > on that > > may be the reason for this as she is quite symptomatic including > deafness > > but right now - they are working to resolve the very severe > cholesterol > > problems. > > > > > > > > Alice > > > > > > > > > > -- > > No virus found in this incoming message. > > Checked by AVG Anti-Virus. > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > 4/13/2005 > > > > > > > > -- > > No virus found in this outgoing message. > > Checked by AVG Anti-Virus. > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > 4/13/2005 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 maybe RH it is time for you to do a poll of how many have an autoimmune reactivity involved in their mito...that may be something then for the researchers to look at if the info. could be given to them at the conference.. That is blood test ANTIBODY positive for say, diabetes,thyroid, rheumatoid arthritis, parietal, gliadin,reticulin etc..hhhmmm could get interesting..especially as some of us do have high readings for some of them.. Gillian > > No, diabetes is common in mito patients, but is just one of many > associated > > conditions. I'm not aware of any studies of the percentage of mito > patients > > who have diabetes, but there may be some estimates in the > literature. Anyone > > know? The UMDF conference (June, St Louis) is offering one session > called, > > " Diabetes and the Mitochondrial Adult Patient " by > Procaccio, MD, > > PhD. Maybe those who attend can post a report. > > > > > > > > Barbara > > > > > > > > _____ > > > > From: klaga5 [mailto:klaga5@y...] > > Sent: Thursday, April 14, 2005 10:55 AM > > To: > > Subject: Diabetes > > > > > > > > > > That's another point. If someone doesn't have diabetes, does that > > mean they don't have mito? > > Kim > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 -Janet, Please do they need to test differently for diabetes then in mito. Gillian -- In , " Janet Sample " wrote: > Definitely not!! My mother had diabetes as did my aunt and grandmother. But, my sister did not and she died at 33 after having seizures. It was then me discovered the MELAS. She had been very healthy and athletic prior to that. > The diabetes is just another symptom that reacts differently with the mito. > Diabetes > > > > That's another point. If someone doesn't have diabetes, does that > mean they don't have mito? > Kim > > > > I was told by my doctor that my particular triglyceride problem > is > > > hereditary and has nothing to do with diet or even exercise. > > Given the fact > > > that the mito is the hereditary factor in our family and that my > > maternal > > > grandmother's death certificate read that she died of heart > > failure, I > > > expect that this is a Mito factor for us. I have heard before > > that high > > > triglycerides is indeed an issue for Mito patients as well but > > don't have > > > any resources to back this up. > > > > > > > > > > > > Here again - as medically recommended - we are fighting the > > effects of the > > > disease by treating the symptoms. I am taking Omega 3 as well > but > > this is > > > something I added myself. I'm also trying to add more fish to > my > > diet. I > > > can't add much in the way of carbs because they do a number on > my > > BS > > > readings. I get my carbs from fruit and vegetables during the > day > > but these > > > are complex carbs. I've actually started a diet program that > is > > giving me > > > hope. I've been on it for a week and in that week, my BS > readings > > have > > > leveled off to normal except for 1 day when I drank tonic water > > with > > > quinine. It's too bad that I didn't read the label before I > drank > > it > > > because it was high in carbs and my sugar jumped over 200 within > ½ > > hour. It > > > never normally goes over 200. I poured the rest of the bottle > out > > and went > > > back to mostly water and my sugar readings are back to normal. > > This morning > > > when I got up, which is the worst time of the day for me > normally, > > my > > > reading was 99. > > > > > > > > > > > > I go for blood work again next month and will know in June if we > > have found > > > the answer to dropping those dangerous T readings. I don't > feel > > too bad > > > about mine though as I have a friend who has had triglyceride > > readings in > > > the 3000 range. I do have a feeling that she has something > going > > on that > > > may be the reason for this as she is quite symptomatic including > > deafness > > > but right now - they are working to resolve the very severe > > cholesterol > > > problems. > > > > > > > > > > > > Alice > > > > > > > > > > > > > > > -- > > > No virus found in this incoming message. > > > Checked by AVG Anti-Virus. > > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > > 4/13/2005 > > > > > > > > > > > > -- > > > No virus found in this outgoing message. > > > Checked by AVG Anti-Virus. > > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > > 4/13/2005 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Hi Gillian, Is there specific guidance on how to test for diabetes in mito? I've had GTT tests, and failed one of four values. I was told two high values would indicate diabetes. Do they recommend HgbA1C (sorry if I get the order of the letters wrong) testing? I also had gestational diabetes with my first pregnancy, but not with others. I have had a tentative diagnosis of hypoglycemia, but also have had high values on the GTT (glucose tolerance test, do they call it the same in the UK?). Take care, RH > > > > I was told by my doctor that my particular triglyceride > problem > > is > > > > hereditary and has nothing to do with diet or even > exercise. > > > Given the fact > > > > that the mito is the hereditary factor in our family and > that my > > > maternal > > > > grandmother's death certificate read that she died of heart > > > failure, I > > > > expect that this is a Mito factor for us. I have heard > before > > > that high > > > > triglycerides is indeed an issue for Mito patients as well > but > > > don't have > > > > any resources to back this up. > > > > > > > > > > > > > > > > Here again - as medically recommended - we are fighting the > > > effects of the > > > > disease by treating the symptoms. I am taking Omega 3 as > well > > but > > > this is > > > > something I added myself. I'm also trying to add more fish > to > > my > > > diet. I > > > > can't add much in the way of carbs because they do a number > on > > my > > > BS > > > > readings. I get my carbs from fruit and vegetables during > the > > day > > > but these > > > > are complex carbs. I've actually started a diet program > that > > is > > > giving me > > > > hope. I've been on it for a week and in that week, my BS > > readings > > > have > > > > leveled off to normal except for 1 day when I drank tonic > water > > > with > > > > quinine. It's too bad that I didn't read the label before I > > drank > > > it > > > > because it was high in carbs and my sugar jumped over 200 > within > > ½ > > > hour. It > > > > never normally goes over 200. I poured the rest of the > bottle > > out > > > and went > > > > back to mostly water and my sugar readings are back to > normal. > > > This morning > > > > when I got up, which is the worst time of the day for me > > normally, > > > my > > > > reading was 99. > > > > > > > > > > > > > > > > I go for blood work again next month and will know in June > if we > > > have found > > > > the answer to dropping those dangerous T readings. I don't > > feel > > > too bad > > > > about mine though as I have a friend who has had > triglyceride > > > readings in > > > > the 3000 range. I do have a feeling that she has something > > going > > > on that > > > > may be the reason for this as she is quite symptomatic > including > > > deafness > > > > but right now - they are working to resolve the very severe > > > cholesterol > > > > problems. > > > > > > > > > > > > > > > > Alice > > > > > > > > > > > > > > > > > > > > -- > > > > No virus found in this incoming message. > > > > Checked by AVG Anti-Virus. > > > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > > > 4/13/2005 > > > > > > > > > > > > > > > > -- > > > > No virus found in this outgoing message. > > > > Checked by AVG Anti-Virus. > > > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > > > 4/13/2005 > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 I do not know if they test differently for diabetes with mito or not. My mother was diagnosed back in the 1970's and died in 1988. We do not know if she had MELAS but assume she did. My diabetes I was borderline in high school in 1980, high enough to not go to the first gulf war in 1991, and in 1997 officially diagnosed with blood sugars in the 400's after fasting. My sister always had normal blood sugars though even though her and my mother were both 5 ft 105-110 lbs. I am more like 5 ft 3 in and 130-150 lbs. Sorry I cannot be of more help. I just know my blood sugar goes up with physical exercise. Janet Sample Re: Diabetes Hi Gillian, Is there specific guidance on how to test for diabetes in mito? I've had GTT tests, and failed one of four values. I was told two high values would indicate diabetes. Do they recommend HgbA1C (sorry if I get the order of the letters wrong) testing? I also had gestational diabetes with my first pregnancy, but not with others. I have had a tentative diagnosis of hypoglycemia, but also have had high values on the GTT (glucose tolerance test, do they call it the same in the UK?). Take care, RH > > > > I was told by my doctor that my particular triglyceride > problem > > is > > > > hereditary and has nothing to do with diet or even > exercise. > > > Given the fact > > > > that the mito is the hereditary factor in our family and > that my > > > maternal > > > > grandmother's death certificate read that she died of heart > > > failure, I > > > > expect that this is a Mito factor for us. I have heard > before > > > that high > > > > triglycerides is indeed an issue for Mito patients as well > but > > > don't have > > > > any resources to back this up. > > > > > > > > > > > > > > > > Here again - as medically recommended - we are fighting the > > > effects of the > > > > disease by treating the symptoms. I am taking Omega 3 as > well > > but > > > this is > > > > something I added myself. I'm also trying to add more fish > to > > my > > > diet. I > > > > can't add much in the way of carbs because they do a number > on > > my > > > BS > > > > readings. I get my carbs from fruit and vegetables during > the > > day > > > but these > > > > are complex carbs. I've actually started a diet program > that > > is > > > giving me > > > > hope. I've been on it for a week and in that week, my BS > > readings > > > have > > > > leveled off to normal except for 1 day when I drank tonic > water > > > with > > > > quinine. It's too bad that I didn't read the label before I > > drank > > > it > > > > because it was high in carbs and my sugar jumped over 200 > within > > ½ > > > hour. It > > > > never normally goes over 200. I poured the rest of the > bottle > > out > > > and went > > > > back to mostly water and my sugar readings are back to > normal. > > > This morning > > > > when I got up, which is the worst time of the day for me > > normally, > > > my > > > > reading was 99. > > > > > > > > > > > > > > > > I go for blood work again next month and will know in June > if we > > > have found > > > > the answer to dropping those dangerous T readings. I don't > > feel > > > too bad > > > > about mine though as I have a friend who has had > triglyceride > > > readings in > > > > the 3000 range. I do have a feeling that she has something > > going > > > on that > > > > may be the reason for this as she is quite symptomatic > including > > > deafness > > > > but right now - they are working to resolve the very severe > > > cholesterol > > > > problems. > > > > > > > > > > > > > > > > Alice > > > > > > > > > > > > > > > > > > > > -- > > > > No virus found in this incoming message. > > > > Checked by AVG Anti-Virus. > > > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > > > 4/13/2005 > > > > > > > > > > > > > > > > -- > > > > No virus found in this outgoing message. > > > > Checked by AVG Anti-Virus. > > > > Version: 7.0.308 / Virus Database: 266.9.8 - Release Date: > > > 4/13/2005 > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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